Where did the issue of health data exchange disappear to?

More visible at Health Privacy Summit than Health Datapalooza

On the first morning of the biggest conference on data in health care–the Health Datapalooza in Washington, DC–newspapers reported a bill allowing the Department of Veterans Affairs to outsource more of its care, sending veterans to private health care providers to relieve its burdensome shortage of doctors.

There has been extensive talk about the scandals at the VA and remedies for them, including the political and financial ramifications of partial privatization. Republicans have suggested it for some time, but for the solution to be picked up by socialist Independent Senator Bernie Sanders clinches the matter. What no one has pointed out yet, however–and what makes this development relevant to the Datapalooza–is that such a reform will make the free flow of patient information between providers more crucial than ever.

Veterans have always divided their visits between the VA and private providers, but any new policy mandating them to bounce around should also require providers to accept and transmit rich collections of patient data so that care can be coordinated. Blue Button, the simple tool invented at the VA and now the most widespread open format for health data in the US, offers the technical means to do so–but implementations are lagging.

National Coordinator Karen DeSalvo interviewed at Health Privacy Summit by Shahid Shah

Strangely, I heard little talk about Blue Button or any kind of data exchange at the DataPalooza. A workshop on Blue Button was held before the conference. Interest in in data exchange more generally was shown by biotech and genetics researchers, such as the Neuroimaging Informatics Tools and Resources Clearinghouse, but not by people dealing with patient data.

In contrast, data exchange was the center of constant buzz at the Health Privacy Summit two days later. This is ironic, because the Datapalooza is bullish on data sharing whereas the summit’s organizers express grave doubts about the industry’s ability to protect patient data in electronic form, or to properly deidentify it.

But the major shared goal of Datapalooza enthusiasts and Health Privacy Summit activists–putting the patient in charge of his or her own health information–requires data sharing. Blue Button, the Direct project, the SMART Platform, and other tools (mostly open source) provide the technical basis for an individual to download data from health providers and start to build up a personal health record (PHR).

Other tools, such as Medyear, let patients selectively share information about themselves with professional providers or other patients. That’s an interesting challenge to the model pioneered by PatientsLikeMe–which, oddly enough, I did not see represented at the Datapalooza–because Medyear lets patients cut out the middleman and form their own communities. They don’t have to ask what the forum they’re using is doing with their data, only what the individuals they choose to have in their networks are doing.

Bryan Sivak as MC on the first day of the Datapalooza

For the Health Privacy Summit, therefore, data sharing is central to achieving their mission. How about the Datapalooza? Why was it merely implicit there? Did I miss a whole swath of sessions where it came up? Were Datapalooza attendees interested only in open data sets, such as the 1,600 that federal CTO Todd Park boasted are now on HealthData.gov? Or have attendees decided to “move on” from the problems of data exchange, either because they assume others are solving the problems or because (more realistically) they have tired of the frustrations and given up?

No matter the reason for minimizing discussion of health data exchange, the choice was a bad one. Data silos are still the order of the day. Hospital mergers take place to a large extent to facilitate the sharing of data without the logistical hassle of crossing organizational boundaries–and unfortunately without resolving the incompatibilities between electronic record systems or giving patients more control.

Although data exchange hasn’t disappeared on the national scene, it’s not exactly parading through the streets either. Rarely can a patient take substantial amounts of data between providers. Many providers, responding to patient pressure, now offer conveniences such as making appointments and ordering medication refills online–the kinds of services everybody else has been doing for ten years. Some offer patients access to their data through portals, sometimes using Blue Button, but often only a few types of information are available there.

Millions have been sunk into health information exchanges, including an innovative Beacon Communities Program that showed encouraging results, but most hospitals remain unconnected and little is exchanged except basic Coordination of Care documents. But solid work is proceeding on many open standards, so we can look forward over the next few years to progress that’s visible from the patient’s perspective.

Data is sexy. That’s why it gets so much play on Strata and elsewhere. Data exchange is not sexy, but that coupling is where the real action takes place.